Jess is both blessed and cursed with what my mom and I always called Little Sister Syndrome. Guys seem to very naturally think of us as their little sisters. It happened to my mom in high school and college, to me, and thankfully now to Jess. It is late but she just came back from getting dinner from the pizza place next door to us. I was about to go look for her because she was gone a few minutes. I thought maybe they were runninglate and she had to wait. That wasn't it. She lost time while standing outside. this means a seizure and the neighbor guy who found her and checked on her said he saw her standing in the same spot when he went to put his laundry in and five min later she was still there, holding the food. He knows her because he ran off a couple of guys who were hitting on her in the laundry a few mos back. Thankfully he is a nice guy and henoticed her. He walked her back and made sure she got in okay.
We still cannot get a doctor to pay attention or care. I have zero clue HOW she will ever build a life. I am so scared for her, but we HAVE to let her go and do things. She is strongly independent natured and tried to be sensible, but she is also 18 years old. She is currently volunteering backstage at the community theater and loves it, and she wants a job but how do you do that when you just stop and stare for up to five minutes at a time (one the clock five min, not I think five min went past but it is only 90 seconds really) and you have many very short seizures also?
We pursued treatment for conversion including biofeedback, therapy, etc.... The tdocs other than the neuropsychologist (who flat out REFUSED testing saying her only problem was being coddled) have flat out said they see zero signs of conversion, that she has dealt well with the abuse from Wiz, is dealing with the koi wtih gfgbro well, and that the 'spells' are seizures that the docs simply have not been able to observe yet.
A few years ago she was on lamictal and it helped greatly. If it was conversion, seizure medications would not help. The medication had to be stopped because it started to make her vomit. The doctor tried depakote but she gained 20 pounds in under 3 weeks so it had to be stopped. We had referrals to several neuros again during that time, but they refused to see her saying it was conversion. The doctor then disappeared who knows where, just closed his practice in 2 locations and turned the phone off. This seems to be standard when you want to move or change yoru practice, at least here. We have seen other docs since, but they are not willing to rx and they stick to conversion because that is what the pediatrican said. The neuros we have seen have admitted that many seizure disorders are not ever caught on tests but diagnosis'd by parent reports, but they won't take ours as true since the pediatrician here put info in her file back when she was 12 saying all her problems were anxiety related and conversion. heck, she even wrote strep throat and allergies off to that and refused to treat them. But her word is still the rule.
Parents on epilepsy boards have been great in affirming that this is probably seizure related esp since we have done the other stuff we were asked to do. I just cannot figure out how to help my baby and my heart is hurtng so bad and I am so scared for her. I am the queen of persistence with medical stuff, heck, I got Wiz into residential when medicare (our insurance) didn't pay for that ever, and they paid evry penny. I found lacements for him later even though we did something different, I still got the option for him. But I cannot seem to find anyone to help my daughter. The read her file and do a short eeg and then write her off.. Yes, we had 2 eegs that were 5 days each. But both times we had LONG periods of time hwen the leads were on wrong and were giving garbage, screens that looked like a 2yo just scribbled on them. Calling to alert the nurses and eeg techs resulted in up to 8 HOURS of wait before anyone bothered to look at the results, results that were supposed to be monitored by a person 24 hours a day. I even found in the records where computer alerts that there were problems were turned off and ignored. On 2 of these occasions at the last eeg, she was having problems and I called from the floor nurse up the chain to the hospital admin's office to get someone to look at them. They could have caught thigns if it was working correctly because she was having seizures then. I could see it and even the floor nurse noted three of what she said looked like absence seizures but were over 60 seconds. But no one would respond to fix the leads. (J did NOT pull leads loose, she was amazingly good with them according to everyone from the aides to the doctors, but over a week they come loose now and then. That is why they are supposed to be checked and have computer alerts.
Iknow you have heard this, but I am again so scared and frustrated. Anything could have happened to her standing thre in the parkign lot at midnight in the cold. ANYTHING. But I cannot chain her to the house and she feels a real NEED for independence. It is about a 30 second walk to the pizza place, closer than the laundry even, so it isn't that big a thing to want to do alone.
I am SO SO SO thankful for Little Sis Syndrome, because otherwise the man could have done anything to her. Anything. I don't know how to balance this. I really don't.
This is mostly a vent, because I know you all understand.
We still cannot get a doctor to pay attention or care. I have zero clue HOW she will ever build a life. I am so scared for her, but we HAVE to let her go and do things. She is strongly independent natured and tried to be sensible, but she is also 18 years old. She is currently volunteering backstage at the community theater and loves it, and she wants a job but how do you do that when you just stop and stare for up to five minutes at a time (one the clock five min, not I think five min went past but it is only 90 seconds really) and you have many very short seizures also?
We pursued treatment for conversion including biofeedback, therapy, etc.... The tdocs other than the neuropsychologist (who flat out REFUSED testing saying her only problem was being coddled) have flat out said they see zero signs of conversion, that she has dealt well with the abuse from Wiz, is dealing with the koi wtih gfgbro well, and that the 'spells' are seizures that the docs simply have not been able to observe yet.
A few years ago she was on lamictal and it helped greatly. If it was conversion, seizure medications would not help. The medication had to be stopped because it started to make her vomit. The doctor tried depakote but she gained 20 pounds in under 3 weeks so it had to be stopped. We had referrals to several neuros again during that time, but they refused to see her saying it was conversion. The doctor then disappeared who knows where, just closed his practice in 2 locations and turned the phone off. This seems to be standard when you want to move or change yoru practice, at least here. We have seen other docs since, but they are not willing to rx and they stick to conversion because that is what the pediatrican said. The neuros we have seen have admitted that many seizure disorders are not ever caught on tests but diagnosis'd by parent reports, but they won't take ours as true since the pediatrician here put info in her file back when she was 12 saying all her problems were anxiety related and conversion. heck, she even wrote strep throat and allergies off to that and refused to treat them. But her word is still the rule.
Parents on epilepsy boards have been great in affirming that this is probably seizure related esp since we have done the other stuff we were asked to do. I just cannot figure out how to help my baby and my heart is hurtng so bad and I am so scared for her. I am the queen of persistence with medical stuff, heck, I got Wiz into residential when medicare (our insurance) didn't pay for that ever, and they paid evry penny. I found lacements for him later even though we did something different, I still got the option for him. But I cannot seem to find anyone to help my daughter. The read her file and do a short eeg and then write her off.. Yes, we had 2 eegs that were 5 days each. But both times we had LONG periods of time hwen the leads were on wrong and were giving garbage, screens that looked like a 2yo just scribbled on them. Calling to alert the nurses and eeg techs resulted in up to 8 HOURS of wait before anyone bothered to look at the results, results that were supposed to be monitored by a person 24 hours a day. I even found in the records where computer alerts that there were problems were turned off and ignored. On 2 of these occasions at the last eeg, she was having problems and I called from the floor nurse up the chain to the hospital admin's office to get someone to look at them. They could have caught thigns if it was working correctly because she was having seizures then. I could see it and even the floor nurse noted three of what she said looked like absence seizures but were over 60 seconds. But no one would respond to fix the leads. (J did NOT pull leads loose, she was amazingly good with them according to everyone from the aides to the doctors, but over a week they come loose now and then. That is why they are supposed to be checked and have computer alerts.
Iknow you have heard this, but I am again so scared and frustrated. Anything could have happened to her standing thre in the parkign lot at midnight in the cold. ANYTHING. But I cannot chain her to the house and she feels a real NEED for independence. It is about a 30 second walk to the pizza place, closer than the laundry even, so it isn't that big a thing to want to do alone.
I am SO SO SO thankful for Little Sis Syndrome, because otherwise the man could have done anything to her. Anything. I don't know how to balance this. I really don't.
This is mostly a vent, because I know you all understand.
